New Face of Leprosy

My name is Anasuya. I’m 33, married, with a 6-year-old son, and I live in the Mother Theresa Leprosy Colony. My husband works in an Aluminium Factory, and, like me, he’s also affected by leprosy. We got married in 2007.

I was brought up about 250km north of here. When I was 11, I got a patch on my right thigh. Shortly after, my left hand began to claw and my right foot dropped. I lost sensation in both of those places. I used to try and hide it from everyone. Two other people from my village had already been separated because of this disease. My mother had died a year earlier, and my father was an alcoholic who never took care of the family.

At age 11, I wanted to commit suicide. I even brought some pesticide, but I remembered my elder brother and grandmother, and couldn’t because of them. I think my grandmother guessed I was feeling suicidal, and she loved and counseled me.

Initially, I was taken to a doctor who incorrectly diagnosed the disease and gave me the wrong medicine for a year. Then I was put on some local herbal medicine. In fact, it was a herbal doctor who told me I had leprosy. It was at that point I thought this was the end of my life.

Eventually, in around 1998, I was taken to a neurologist in a government hospital, was finally diagnosed, and referred to a leprosy hospital in Jagikyal. I took MDT for a year and, in 2004, was referred to Shivananda Hospital for reconstructive surgery on my hands and feet.

I had stopped going to school by class 7 because I didn’t want anyone to look at my claw hands and ask questions. Still, until today, nobody in my village knows that I had leprosy. I told people that after my mother died, I became weak from lack of nutrition. I used to travel 20km every month to pick up my MDT medicine. They said they could deliver it to me, but I didn’t want anyone coming to the village. The doctors had told me everything would be alright with the medication, but it was mainly counseling from my grandma that got me through.

My mother lost her vision when I was about 7. My father and the whole family converted to Christianity so that it might be restored.

While I was getting reconstructive surgery, the physiotherapist arranged my marriage with one of the other patients getting surgery at the same time, although it was two years until we were actually married. My husband is 10 years older than me. We got married on 1st May 2007 and moved into our own home straight away as there wasn’t much room at his parents’. We heard about this colony where the government gives the plot of land for free and moved here a year later. My brother lent us money to build the house.

My brother is 3 years older than me and an auto driver. Alongside my grandma, he has always taken very good care of me. His son is the same age as mine, and he lives here with my family as he can get a good education in the same school.

Until 2011, I was a housewife only, but I was dreaming of doing some work. At that point, the Chetana project funded by the Sasakawa Foundation came along, and I was made the ‘lokdooth’ – educating ASHA workers about leprosy and also counseling those affected. I also helped them do dressings for their ulcers. I was taught self-care at the first hospital I went to and have taken care of myself ever since. I always wear MCR sandals. Other than a minor ulcer on my foot, I’ve had no major issues, but my husband has got a recurring ulcer.

I loved that job. I learned so much, and it gave me so much confidence. I was sad when it finished. Shortly after, my son was born, so I was looking after him, but now he’s in class 2, I want to find some work again. I can’t do physical work, but I would like to work with people affected by leprosy. My son is the most important thing in my life, and his education has been supported by LEPRA for the last 3 years.

My advice to those newly affected is that there’s no need to get depressed because it’s leprosy. It’s like any other general disease that is curable with medicine.